The Pediatric Cystic Fibrosis Program at Phoenix Children’s cares for children with cystic fibrosis from infancy though early adulthood. The team assists with interpretation of Arizona newborn screening results, confirmation of diagnosis, acute and chronic medical care, and health care maintenance.
Because cystic fibrosis affects other organs in the body, the Pediatric CF Program holds combined clinics with other sub-specialties, including Gastroenterology, Endocrinology, and ENT (Otolaryngology).
CF is a lifelong disease and we see our patients and families for many, many years. As partners in care, we will listen to your concerns, and work with you and your family to make the best choices about medicines, diet, exercise, and other therapies.
Because there are many social, emotional, and cultural needs of our CF patients and families, we will work together to provide comprehensive and compassionate care that is tailored to you and your family’s needs. Our team partners with pediatrician providers within the CF community to address the need for transplant referral and evaluation as well as post-transplant CF care.
Transitions and Adolescence
The Pediatric Cystic Fibrosis Program also recognizes natural transition times in infancy, toddler years, school-age years, preadolescence, adolescence, and early adulthood. Our team encourages active preparation for these transitions, and involvement of patient, family, and members of the CF team.
Objectives include fostering age-appropriate independence, self-management of CF care, taking CF treatments and therapies, navigating life with CF, and obtaining a strong understanding of CF. We believe that transferring the responsibility of CF care from parents to patient in a structured and carefully managed way in partnership with the clinic can ensure the development of a successful independent young adult living with CF.
Because the Pediatric and Adult CF Programs share facilities and some resources, we work toward minimizing disruptions of care related to transition from Pediatric Care to Adult Care.
Conditions We Treat
- Pediatric Cystic Fibrosis
- Cystic Fibrosis Related Metabolic Syndrome (CRMS)
- Cystic Fibrosis Screen Positive, Inconclusive Diagnosis (CFSPID)
- Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) Dysfunction
- Indeterminate Sweat Test/ Diagnostics
- Pre-post CF Transplant patients
Programs & Services
- 1 Darn Cool School
- Care Conferences
- Child Life
- Cystic Fibrosis Patient/Parent Workgroup
- Newborn Screening
- Nutrition/Dietician
- Patient & Family Services
- Pharmacy Services
- Physical Therapy
- Pre-Post CF Transplant patients
- Pulmonary Medicine
- Social Services
- Sweat lab
Combined Clinics
- CF/ Ears, Nose & Throat (ENT) focuses on patient sinuses
- CF/Endocrinology (Endocrine) focuses on CF Related Diabetes (CFRD)
- CF/ Gastrointestinal (GI) focuses on gaining weight, maximizing nutrition and supplements
Procedures
- Bronchoscopy
- Pulmonary Function testing
- State-of-the-art chest imaging